considering hysterectomy

Hi all, this is my first post here. This site was recommended to me by a friend to help me sort out my feelings about possibly having a hysterectomy.

Almost exactly one year ago my periods went from scant 3-4 day, no problem kind of things to 8-10 day, extremely heavy bleeding, gushing, clots, etc. It's such a pain, I can't even leave the house for two days, I can't find a way to prevent accidents. I have developed anemia because of the heavy bleeding and although I'm on iron sups, during my period and for a few days after I'm exhausted, weak, cold, even confused sometimes. I'm so tired of this.

I live in very smalltown Alberta and I've been seeing my GP about this problem for quite some time. Because I had anemia he was concerned that it might be something like uterine cancer so he did a biopsy and it was negative. I had an ultrasound for fibroids, negative. He finally recommended I see the visiting gyno about it.

I saw the gyno about this today for the first time (he's a specialist that only comes here once a month). After discussing my symptoms he told me my options were:

- BC pills (I'm not interested in this, I have had bad side effects from them in the past)
- IUD (not terribly interested in this either, although all the information I have in my head about it goes back to when I was a lot younger when they tended to cause bad cramping and heavier bleeding, maybe they're better now?)
- ablation (he said this was preferable because it's only day surgery and if this was successful I may not have any period at all or just scant but he said 30% of the time it's not successful and then I would have to have a hysterectomy)
- hysterectomy (2-3 day hospital stay whether it's vaginal or abdominal, 4-6 week recovery, irreversable and major surgery)

He did an exam and determined that it appeared that I was a candidate for a vaginal hysterectomy (as oposed to an abdominal one) which would be much preferable to me. So he said I would be scheduled for a hysterectomy, hopefully vaginal but on the understanding if something went wrong and they couldn't proceed vaginally they would have to do abdominal while I was under.

Now that I've come home from this app I'm feeling quite upset about this. It is what I thought I wanted, just to have this problem over with. Everyone tells me if I have a chance to have a hysterectomy go for it, I'll love it, no more problems. But, these are my issues:

- another major surgery. In the past two years I've had 3 major surgeries (stomach stapling, very extensive tummy tuck and other excess tissue removal) and my family and I are very tired of surgeries and recoveries. =(

- this gyno will do the procedure right here in my hometown hospital but we have a conditional offer on our house and we may be moving on June 21. So if it can't be scheduled before then I would have to start all over with another gyno. And if it can be scheduled before them, how are we going to move with me recovering from a hysterectomy?

- is this heavy bleeding enough of a reason to go this far? I'm wondering if I shouldn't examine my options more thoroughly. Plus, I'm unhappy with myself because I have more questions for the gyno that I didn't ask when I was there (didn't know to ask them) and now I need more info and I probably can't get it. Like, I didn't confirm that my ovaries would be left. I just assumed. I shouldn't do that. I also don't know what would be done with my cervix. It's tender, I have painful intercourse because of it. Would it be removed too or not? How is that decision made? If it is, what's left in there? Is there no "bottom"?? Know what I mean? The way things stand now, when my husband and I have sex when he "hits bottom" it hurts. Would there be a bottom if my cervix was removed? What would there be? (I'm confused about the anatomy of it).

- when the gyno was examining me he asked me to bear down to see if the uterous would descend, it did and he said that means a vaginal hysterectomy is possible. But he was concerned because he says my bladder also descends somewhat. What does that mean, I mean, what are the ramifications of that? He asked if I have stress incontinence (no, not since I lost weight) and if I sometimes sit down to pee, then stop, stand up, then have to sit down right away and pee some more (no). So he said the bladder is asymptomatic and wasn't a problem. But if he took my uterous out, would that mean my bladder would always want to be falling out? He said I should continue and step up my pelvic floor exercises for this situation.

Any feedback on this would be appreciated. As you can see, I'm not very informed about these issues. Sorry this is so long. Thank you.

Hi Tessatessa!
You've come to the right place!
Because of this site, I've learned a great deal about the details of the options available besides hysterectomy. Have you read the pre and post op parts of this site? Some of those posts should help answer some of your questions regarding hysterectomy.

I'd also like to recommend these sites to you:

http://www.biomedcentral.com/1534-5874/2/417
( This one dscribes the Mirena coil IUD)

http://www.gynsecondopinion.com/home.htm
( This one was really quite helpful...I bought this doctor's book because it seemed to answer ALL my questions!)

Also, vitamin C can help aleviate some of the heavy bleeding (as does naproxen sodium aka "Aleve")( I take both of these myself )
http://www.wdxcyber.com/nbleed12.htm

All I can suggest is to keep researching and read as much as you can before undergoing major surgery.

Please take care and keep us posted. I wish you all the best!

Dear Tessa,

I never planned on the day that I would get an IUD, but I have one now. Many are hoping that women will be able to shed the negative impressions that were caused by one former particular IUD, and the new Mirena IUD is gaining a good deal of popularity.

The Mirena is particularly noted to lessen bleeding, though I have heard that in some women it may initially cause more bleeding...I didnt notice this myself, but bleeding wasnt my problem.

The Mirena IUD is fairly new in the USA(2001) and contains progestins only. The progestin is in lower amounts than that of bcps and therefore dont tend to cause as much side effects as people tend to hear about with progestins (though I didnt have them) and it's effects are more direct considering it's location. It usually decreases the monthly flow and a good number of women dont even get a period with it. It is good for five years.

I have one. I'm on my 6th month with it and wonder if my monthly will make it's slight appearance.

Though it's primary use is as a form of birth control, it is used in cases of endometrial hyperplasia (sometimes even in low stage cancer), fibroids (typically for smaller or medium sized ones if there isnt too much distortion), cases of excessive bleeding where the cause has been elusive, endometriosis, and adenomyosis.

Mine is doing just fine now (I have it to prevent recurrence of hyperplasia) but I will admit that the placement is not fun, and it seems that good placement is somewhat a matter of luck (having had 2 placed in the past due to medical treatment) or ongoing cramping may occur. Mine has been so comfortable that I've had moments of doubt that it was there.

http://www.womens-health.co.uk/mirena.htm

Pat

Originally posted by tessatessa
Hi all, this is my first post here. This site was recommended to me by a friend to help me sort out my feelings about possibly having a hysterectomy.

Almost exactly one year ago my periods went from scant 3-4 day, no problem kind of things to 8-10 day, extremely heavy bleeding, gushing, clots, etc. It's such a pain, I can't even leave the house for two days, I can't find a way to prevent accidents. I have developed anemia because of the heavy bleeding and although I'm on iron sups, during my period and for a few days after I'm exhausted, weak, cold, even confused sometimes. I'm so tired of this.

My situation is a little similar to yours. I had always had rather heavy periods, but for the last few years they had gradually gotten heavier and heavier. In my case this is probably due to my fibroids--I have three small-to-medium size ones. I can remember a few times bleeding until my knees started to feel wobbly. I was definitely anemic, and fed up with being "chained to the toilet" one or two days out of the month.

I live in very smalltown Alberta and I've been seeing my GP about this problem for quite some time. Because I had anemia he was concerned that it might be something like uterine cancer so he did a biopsy and it was negative. I had an ultrasound for fibroids, negative. He finally recommended I see the visiting gyno about it.

I saw the gyno about this today for the first time (he's a specialist that only comes here once a month). After discussing my symptoms he told me my options were:

- BC pills (I'm not interested in this, I have had bad side effects from them in the past)

After the side effects I had with my first prescription I can totally sympathize! The first batch of BCP I got were definitely a case of "the cure is worse than the disease"! My period became twice as long as usual (over two weeks in one case) and no decrease at all in bleeding on the heaviest days, plus icky PMS-like side effects. My MD changed the estrogen/progesterone ratio, and now the second kind of Pill is controlling the bleeding without the disagreeable side effects I got with the first one. So if you've tried several different kinds and they all cause disagreeable side effects, cross them off your list. If you've only tried one kind, it might be worthwhile to discuss with your MD or the visiting gyn whether tweaking the relative levels of the two hormones might provide relief without the side effects.

- IUD (not terribly interested in this either, although all the information I have in my head about it goes back to when I was a lot younger when they tended to cause bad cramping and heavier bleeding, maybe they're better now?)

I am now thinking of switching from the Pill to the progesterone releasing IUD (Mirena). This is quite likely what the visiting gyn had in mind for you. Unlike other types of IUD's, it tends to decrease bleeding rather than increase it, and many women have no period at all as long as the device stays in place--up to five years. I have done a little reading and apparently it is beginning to be used (more in Europe and the UK than in the US--I don't know about Canada) for treatment of excessive bleeding due to various causes. Apparently the early results from some of the studies being done for non-contraceptive uses of the device are quite promising. I asked my gyn whether in his opinion, the Pill or the Mirena was safer over the long term. I'm 48, but my mother was 54 at menopause so it may still be several years until I arrive at that point. His reply was, the IUD. I read somewhere that the Mirena was not appropriate for women who had never had children, but when I asked my gyn he said it's because there is a slight possibility of infection which is easily treated but could cause infertility. At my age, I'm not worried about maintaining my fertility, if I have any to maintain, which is pretty doubtful according to my MD. You don't mention how old you are or whether staying fertile is an issue with you. If it is, maybe the Mirena is not for you, but if your family is complete it certainly would be worth discussing further with the consulting gyn at the next visit. There are also vaginal rings that release progesterone. I haven't done much research on these but they might also be something to ask the gyn about. And the nice thing about the ring or even IUD--if it doesn't work or causes side effects, you just have it taken out. Althought I believe you would need to go to the specialist to have it inserted, I think your local MD could probably remove it if necessary, I doubt you would have to wait for the visiting gyno to come back.

- ablation (he said this was preferable because it's only day surgery and if this was successful I may not have any period at all or just scant but he said 30% of the time it's not successful and then I would have to have a hysterectomy)

Ablation was also suggested to me as one option. The possibility that it might not be a permanent solution was one thing that made me cross ablation off my list. However, lots of women have been very satisfied with the results.

- hysterectomy (2-3 day hospital stay whether it's vaginal or abdominal, 4-6 week recovery, irreversable and major surgery)

He did an exam and determined that it appeared that I was a candidate for a vaginal hysterectomy (as oposed to an abdominal one) which would be much preferable to me. So he said I would be scheduled for a hysterectomy, hopefully vaginal but on the understanding if something went wrong and they couldn't proceed vaginally they would have to do abdominal while I was under.

Now that I've come home from this app I'm feeling quite upset about this. It is what I thought I wanted, just to have this problem over with. Everyone tells me if I have a chance to have a hysterectomy go for it, I'll love it, no more problems.

When I first started seeking treatment for my heavy bleeding, I was leaning toward hysterectomy. I thought, "a hysterectomy will definitely end the bleeding and that's what I want. What do I need a uterus for anyway? I'm certainly not going to start a family at my age, even if I did get married." I thought of hysterectomy somewhat along the lines of having one's wisdom teeth out...you might be pretty miserable right afterwards, but once you'd healed, you'd never miss it. All the reading I've done, on hystersisters and books from the library, has convinced me otherwise.

But, these are my issues:
- another major surgery. In the past two years I've had 3 major surgeries (stomach stapling, very extensive tummy tuck and other excess tissue removal) and my family and I are very tired of surgeries and recoveries. =(

- this gyno will do the procedure right here in my hometown hospital but we have a conditional offer on our house and we may be moving on June 21. So if it can't be scheduled before then I would have to start all over with another gyno. And if it can be scheduled before them, how are we going to move with me recovering from a hysterectomy?

- is this heavy bleeding enough of a reason to go this far? I'm wondering if I shouldn't examine my options more thoroughly.

After reading many of the posts on this site and realizing how much severer symptoms many hystersisters had than I do, I too wondered if I was making a mountain out of a molehill to be considering major surgery when my problems were really more of an annoyance than a threat to my health long term. Eventually I decided I would try to reduce the bleeding to manageable levels with non-surgical options, but if that didn't work I would probably request a hysterectomy. But other women as close to menopause as I am might decide to "tie a knot and hang on" rather than have surgery. For you, especially with a possible move coming up, I think you are smart not to rush into surgery at this time. Can I make a suggestion? Next time the visiting gyn is in town (if your move is before the gyn returns perhaps you can send a letter or ask your local MD to contact the specialist), explain about the move and ask what you can do as a 'stopgap' measure to control the bleeding for a few months until you have gotten settled in your new place. That will give you lots of time to make a long list of all your questions and concerns to take to your new doctor.

Plus, I'm unhappy with myself because I have more questions for the gyno that I didn't ask when I was there (didn't know to ask them) and now I need more info and I probably can't get it. Like, I didn't confirm that my ovaries would be left. I just assumed. I shouldn't do that. I also don't know what would be done with my cervix. It's tender, I have painful intercourse because of it. Would it be removed too or not? How is that decision made? If it is, what's left in there? Is there no "bottom"?? Know what I mean? The way things stand now, when my husband and I have sex when he "hits bottom" it hurts. Would there be a bottom if my cervix was removed? What would there be? (I'm confused about the anatomy of it).

- when the gyno was examining me he asked me to bear down to see if the uterous would descend, it did and he said that means a vaginal hysterectomy is possible. But he was concerned because he says my bladder also descends somewhat. What does that mean, I mean, what are the ramifications of that? He asked if I have stress incontinence (no, not since I lost weight) and if I sometimes sit down to pee, then stop, stand up, then have to sit down right away and pee some more (no). So he said the bladder is asymptomatic and wasn't a problem. But if he took my uterous out, would that mean my bladder would always want to be falling out? He said I should continue and step up my pelvic floor exercises for this situation.

They're your ovaries and your cervix so you get to decide whether they stay or go, based on your doctor's advice (maybe more than one doctor) and your own knowledge of yourself and how you react to things. My own preference, if I do end up needing a hysterectomy later on, is to leave my ovaries and cervix in. There's nothing the matter with mine and from what the doctor said about your test results it doesn't sound to me like there's anything the matter with yours either. My gyn said there is less likelihood of incontinence if the cervix is left in place, because the pelvic floor doesn't have to be disturbed as much during the surgery. Since you are doing pelvic floor exercises already and your doctor seems to have some concern about your bladder, this could be important for you.

Any feedback on this would be appreciated. As you can see, I'm not very informed about these issues. Sorry this is so long. Thank you.

Well, you've come to the right place to find out what questions to ask. I haven't had the surgery myself but over and over again I read hystersisters saying
--they are glad they found out as much as they could before surgery and made an informed decision
--they are glad they tried alternatives before their hysterectomy, even if those alternatives ended up not working
--they are glad they didn't rush into surgery but in some cases even cancelled, and didn't go ahead until they KNEW they were doing the right thing for them. Now I've made your post twice as long as before..I hope it helps

cookie1956

Thank you so much for the replies! =)

I had put in a call asking for the gyno to call me back if he could. He did a while ago and I asked him about the IUD, he confirmed it was the Mirena $350, yikes! But he thought it might help me a lot and I should consider it before deciding on major surgery, he's right of course.

I asked about the ovaries being left and he said they definitely would be left, there was no reason to remove them. Plus, with a vaginal hysterectomy they wouldn't be able to get at them anyway.

I asked about the cervix being removed. He said it would definitely be removed because with a vaginal hysterectomy they would have to. I asked him about depth issues with sex later and he said it wouldn't be a problem at all. I'm picturing this, someone said your vagina ends up being like the finger in a glove with no cervix because they sew up the end, further decreasing the depth by a little bit. I just burst into tears when I read that for some reason that really upsets me.

In the end I told the gyno on the phone that I had decided to hold off and think about my options. I'm all mixed up and I don't know what to do. And because I'm in the midst of another period I feel like crap too and that's not helping.

my husband called me a few minutes ago to ask how the appointment went. I explained my options and he said "well you might as well just have a hysterectomy and be done with it right"? Ugh! Men! It didn't help my frame of mind at all.

Anyway, I'm so glad I decided to come here, it is helping to get information and work things out in my mind. I will further investigate the vitamin C thing as well. Thank you all.

Hi Again Tessa,

About the cost of the IUD.. Insurance will often cover it. Mine did.
I made it a point to indicate that it was for noncontraceptive reasons. Hey, ...what insurance company wouldn't want to shell out a few hundred vs the thousands for surgery?

	Quote:
Originally posted by tessatessa I'm picturing this, someone said your vagina ends up being like the finger in a glove with no cervix because they sew up the end, further decreasing the depth by a little bit. I just burst into tears when I read that for some reason that really upsets me.

I know it may sound like you won't have much left, it isn't like that at all. AND remember that the vagina is very expandable...and when aroused it lengthens. Your dr. is right--you shouldn't (and neither should he) notice a difference. Of all the posts I've read here (and I've read a LOT over the past couple of months) I only read one sister whose dh said he felt a stitch or unhealed scar tissue. And that is temporary... Everyone else said they don't feel "shorter" in any way--whether they kept or took the cervix.

So, here I am on the second day after my doc saying he was going to schedule me for a hysterectomy. I've been doing some reading here and I have to admit, I'm scared to death about this. And believe me, I'm not a wimp, in the last 2 years I've had 3 surgeries and I was quite stoic about them all but this thing is really throwing me for a loop.

From reading here I'm finding out about:

- belly swelling that lasts for months
- post op depression (I have clinical depression and I've finally started feeling better after starting on Wellbutrin last week of march, I really don't want a relapse, actually since yesterday I feel like I'm already relapsing because of thinking about this hysterectomy)
- post op sugar cravings (I've worked very very hard to get my cravings and weight under control over the past two years since I had stomach stapling surgery and I would hate for that to go out the window, which it may if I get into sugar/starch again)
- if my husband will look after me - it sounds like this hysterectomy may be a lot tougher to recovery from than my other surgeries and they were bad enough. When I told my husband about this yesterday he had a pretty cavalier attitude about the whole thing, I just can't see him giving me the help and support I would need to recovery from this, especially if it's close to the time we're moving)
- constipation/bowel problems? I have issues with that already because of weight loss surgery and my diet.
- pain/cramping/bleeding for weeks?? Yikes! Normally I'm pretty tolerant to pain but the recent surgeries have worn me down.

The more I read, the more scared I get. =(

Hi Tessa don't be scared. Once you make the decision you will be OK. Recovery can be easy - mine was, and I'm 62. And yes, your vagina will feel a bit different, but its easy to adjust to, and sex is still fine and pleasurable (more so for many women it seems as there is no pain anymore). If you can manage without surgery that is fine too, as long as you feel well in yourself with whatever treatment is given. Timing seems to be the big issue with you so maybe you should wait until you are resettled and can enjoy being a Princess if that's the way you choose to go.
hugs
Katie

	Quote:
- ablation (he said this was preferable because it's only day surgery and if this was successful I may not have any period at all or just scant but he said 30% of the time it's not successful and then I would have to have a hysterectomy)

I had a D&C and an ablation about 3 years ago because it was my least invasive option, meant less time off work, etc. I had been having horrendous cramps for years, caused by multiple fibroids, one of which was sticking into the uterine cavity. I was also told that in about 20% of cases, the ablation was not a permanent solution because both the fibroids and the lining can grow back, and, in fact, the fibroids are back and bigger and more painful than ever, and I am now exploring a hysterectomy. (I'd do the ablation again, but the fibroids are in different places, drat them, and apparently it won't help.)

On the other hand, I had just about 2 years of minimal bleeding (I never bled _that_ heavily until recently, but this was more like light spotting) and I was essentially pain free. I started bleeding more heavily about a year ago, and then the cramps came back with a vengeance over the last 6 months.

The procedure itself was pretty minor - I had some bad cramps immediately afterward, and I was too tired to go to work for a couple of days, but that was it.

Given your situation with moving and everything, it might be worth looking into the ablation to see if it could give you some short-term relief? I hope you find something that works for you - you have been through a lot, and you deserve something easy!

M.